Replies to This Discussion

Permalink Reply by Airam-FFA on August 28, 2017 at 1:37am

Hi Isabel

Thank you for the information on the Aloe Vera gel that you use. I have been looking on the optima.com website - very useful as I want to move to natural products.

Many thanks for sharing.

xOx

Permalink Reply by Airam-FFA on August 28, 2017 at 1:30am

Hi Vicki

I have this week been prescribed the steroid shampoo and lotion to use for two to three months. The Hospital Pharmacy at Guy's gave me just the one month supply and I was told to ask my GP for the other months. I forgot to ask if Guy's will give me a follow on appointment.

How did you get on with shampoo and ointment? And did you notice any improvement? I have to use about half a tablespoon on dry hair and to leave for 15 minutes before washing off the shampoo then to use the lotion. The half tablespoon is supposed to be sufficient for my whole head but I am finding that it does not spread that well, so am just using it on the front portion of my head. I will use the shampoo daily as prescribed even though it is a drag to wash my hair daily.

xOx

Permalink Reply by Jules Australia on June 29, 2017 at 11:57pm

Hi Beez, I couldn't have described this ghastly condition better myself......i agree with everything you've said.I also have had this for about 5 years since it started in 2012 with terrible scalp dysesthesia & hiarloss from front & around ears, not to mention awful change in quality (& looking back suspect it may have started a couple years before then (incidiously). I have chosen not to take any medication as all the research i did in first year & since tells me that there's no conclusive efficacy in anything that has been thrown at this relentless progressive diisease. I agree, where a the ethics within the medical profession prescribing such harsh drugs that just have no evidence as effective. My ffa/lpp . (After the first 18 mths or so) of symptons slowed considerably incl much milder scalp pain; but it flared up again a few mths ago, after about 2 & half years of v slow progression. The symptons seem to wax & wane over time (even without any drugs), so v difficult to prove when drugs help or if its just the natural course of disease. Thanks for yours & everyone elses comments on this site......i know everyone experiences this differently....& need to approach it in their own way......but one thing we all have in common is the challenge to our sense of well being staying in tact along with our emotional well being, & the physical & social interaction changes this disease forces upon us....thankyou all for your comments

Permalink Reply by SandyA on June 30, 2017 at 3:04pm

I've never colored or dyed my hair using synthetic chemicals except by using Sun-In for a couple months in my teens. I did however use a pure plant-based henna at the time I was diagnosed and for a couple years prior. However, I have hair loss in other areas of my body that have not been exposed at all to *any* hair dyes. I guess there may be a chance the henna triggered a systemic reaction but I'm more inclined to think there may be more of a link between chemical sunscreen and FFA (all areas where I have loss have been exposed to regular application to chemical sunscreen).  

My father, too, shows signs of FFA although never diagnosed and he's never used hair dyes.

Permalink Reply by Classical Anne in NC mountains on June 30, 2017 at 5:12pm

Great questions and some interesting responses.  I am 67, have never dyed my hair, straightened it only in my teens.  And since having a sunstroke at 17, and multiple autoimmune diseases and medications since then, have not used sunscreen either.  [Yes it's hot in long sleeves and hats all summer!]  

I'm specially interested in Jules' response, that it waxes and wanes even with no medication or treatment at all!  I'm seriously thinking about stopping my treatment by the end of this year.  I'm ready to go ahead and just deal with whatever's going to be left, and stop fixating on it as it goes.

As for the other body hair, I was completely surprised to discover I didn't have a single hair on my arms.  Never noticed it leaving.  But for 3 years I was envious of all the ladies saying they'd lost the hair on their legs.  I am still shaving, but at last it is decreasing. 

This forum has been a true friend along this challenging road, even though I may go months without checking in.  But my derm asks me every time I go, "Anything new on your forum?"

Best wishes to all

Permalink Reply by Minter on June 30, 2017 at 8:51pm

First, I can definitely vouch for Wunderbrow! Funnily enough, I just got it off of Amazon 2 days ago and it is great, my brows are very thin and it thickens them up and it stays on, I mean it really does stay on until I wash it off. As far as coloring hair, I didn't really start coloring my hair until my late 30's (I am 52) even then it was done very sporadically until my late 40's. I was also surprised like Classical Anne last summer when I looked down at my arms and realized I didn't have one hair on my forearms & same as Anne, barely shaving my legs. I don't know about this sunscreen connection- I do know that if I use regular sunscreen, not for sensitive skin or just zinc oxide my forearms get very itchy unless I wash it off as soon as I can. But, I will put up with the itching if it means that I can avoid skin cancer. I have also stopped all medication, except for Clobetasol as I have mentioned before for itchy skin-

First, I can definitely vouch for Wunderbrow! Funnily enough, I just got it off of Amazon 2 days ago and it is great, my brows are very thin and it thickens them up and it stays on, I mean it really does stay on until I wash it off. 

As far as coloring hair, I didn't really start coloring my hair until my late 30's (I am 52) even then it was done very sporadically until my late 40's. 

I was also surprised like Classical Anne last summer when I looked down at my arms and realized I didn't have one hair on my forearms & same as Anne, barely shaving my legs.

I don't know about this sunscreen connection- I do know that if I use regular sunscreen, not for sensitive skin or just zinc oxide my forearms get very itchy unless I wash it off as soon as I can. But, I will put up with the itching if it means that I can avoid skin cancer.

I have also stopped all medication, except for Clobetasol as I have mentioned before for itchy skin- luckily I don't have much itchiness on my scalp, though it is tender.  

This disease sucks, it really does and as I've said before, I am so thankful for this forum!

Permalink Reply by illustr8r on June 30, 2017 at 10:00pm

I find it funny that I find articles that say hormones aren't considered a factor in FFA because once you get on HRT it doesn't stop the FFA. However, considering that the majority of ladies with this are menopausal (I'm 52) I have to say hormones must play some part-but I'm not a doctor!

My eyes brows disappeared 5 years ago and that's when I was in peri menopause. I still have some hair on my arms and legs. It's much finer and there is less of it. Oh, and hair "down there" is thinning. I thought maybe my jeans were too tight or something when I first noticed. LOL! No itching or pain ever with my ongoing hair loss until my hormones crashed (so badly I joked I "was a boy now"). I had a horrible flare. It triggered a positive ANA result and I had to see a rheumatologist because they thought I had scleroderma. More detailed tests and I was negative on everything. Whew! Back to the Derm and after a biopsy she said lichen planopilaris with mild to moderate fibrosing. Up till that all I heard was, "as we age," explanation for my ongoing hair issues. Grr!

Dermatologist offered Plaquenil and steroid shots. I refused the Plaquenil for various reasons you might have read on other posts. Steroid shots I'll try if there is another horrible flare and desperately needed relief, maybe.

I have colored my hair since my 30's. Yeah, in hindsight was that a good idea? However, think of all the crazy things our moms put their hair through back in the day-are they going bald? My mom still gets a perm. She has more hair than me.

I have used sunscreen but not religiously. Here and there but definitely not as much as advised.

I'm thankful for this forum because I take enough pills a day ( I have CKD) and reading about everyone's experiences on this drug or that helped me feel more comfortable with my "do no harm" outlook. I think until someone says "this drug stops FFA" I'll stick with Clobetasol and a good diet. I started the AIP diet last week. I'm going to do it for 3 months to see if the hair fall lessens and if my skin becomes less blotchy. Fingers crossed!

Hugs to you all!

(Stupid 'effin disease.)

Permalink Reply by Halfbakedwho on July 1, 2017 at 1:51pm

I am also going to start the diet! We should have a "diet group" in the group? I also think I will refuse the Planquenil if offered... scary sh--t. Says I.
- Cara

Permalink Reply by Sequingirl on August 14, 2017 at 12:44pm

I hate this disease. My hair is an enormous issue. Many would say I am so lucky that it's curly and is cut to cover the huge landscape of my forehead. More like an EIGHThead. I'm depressed today. Hateful. Supposed to go to a bridal shower Saturday and it's outside. I know how obsessed I'll be. Hats are great but....many materials especially straw irritate the skin further. I just learned about the hair integration system but god you have to go every four weeks to have the fibers rewoven in for strength...I feel so crappy about how I look when outside either sweltering under a hat or scratching at skin under a scarf. It's just so unfair. And the saddest part is that even if I'd known what was happening sooner the process would have continued. Five inches of hair. I look worse than Queen Elizabeth or Tulsa Swindon the actress. Wish I had the guts to shave my head.

Permalink Reply by AnnieMay on August 14, 2017 at 11:59pm

Ohhhh. . .I'm so sorry you're having a hard time right now. It is SO unfair and you have every right to be mad that this horrible disease has changed all of us in so many ways. I am a different person because of this. I used to be a confidant strong person and now I just want to hide. I was just on vacation with my family but I didn't go swimming because I couldn't bear the thought of my family seeing me this way. I tried to wear hats and it drove me crazy because my scalp is so senstivie, How can I ever wear a wig? Will I have to wear a wig when my girls get married? I am right there with you and it makes me cry. . .

No easy answers and such an unbelievable journey for all of us. Somehow, someway we can't let this awful disease take away our lives. Thinking about you   

Permalink Reply by pauliegirl on August 15, 2017 at 12:41am

Sweet Sequingirl, Along with AnnieMay, I feel so much for you and wish this could be taken away from your life...our lives. Of late I have also had some very very sad times. I say if I could just go back and have a life without this... I think we all feel that way. Cruel disease and there are some out there who really get it, but many don't. Even if they think they do;) At a very low point a few days ago, my husband said something that gave me the teeniest bit of perspective and I hope it helps... I attend a hair loss support group. There I have seen another with FFA, others who you can't even see anything and they are still distraught. Also once there was a darling young gal there (early 20's) who was completely bald. I remember thinking how precious she was and if my son brought a girl like her home I would be so happy for him! Back to my husband's question...after I was crying and saying how stupid I look and how much more terrible it could be; that I didn't want to and can't live like that. He then asked how I thought of any of those people in my support group. THAT made me stop and think. I like all of them! A lot! I think they are really great and kind and fun and funny! And yes I would like to hang out with them and be their friend. So...I would think that our family and friends think the same of us, NOT how we are seeing ourselves!
I hope that helps a little. Much love and prayer for hope for you and for all of us.

Permalink Reply by Halfbakedwho on July 1, 2017 at 1:44pm

I agree with you about the drugs. I am very, very wary about taking meds that add more issues to deal with - more side effects, and who knows what - and you're right about our kidneys- I care more about my overall health than my hair. I haven't had anything prescribed yet, have my appointment with a specialist on July 20th. Am actually a bit scared of what she will say, b/c to be honest I was diagnosed online through pictures I sent in to a clinic. I don't have an "official" dx yet. But I look like all of you, and it's obvious that this is what I have.
All that being said, I am hopeful about a new diet I am starting (no gluten or milk products), and I am going to be moving to a new town soon, and would like to start taking care of myself a bit differently - yoga, writing, etc.
OK - here are my answers to the other two questions.
I am going to start taking estrogen in a patch, and progesterone. I don't know if this will help. I haven't had a period in about 7 months or so (don't remember exactly), I'm 51.
I used to color my hair in my 20's, I have been getting highlights now for about 20 years. I also used to get Brazillian straightening. I admit that the last time I did the latter, in January, my scalp burned during the treatment but I tried to ignore it.
I don't think the highlights are a problem, but I won't do the Brazillan again. My hair has changed texture, and I blow it out straight, as best I can (not very well admittedly). I also get my hair blown out professionally, and I am starting to do this once a week (not too expensive here). This keeps up my morale, and the hairdresser is comforting...
I am in a wait and see mode - my hair has been falling out for a couple of years but it's only now I'm paying attention and, sadly, worrying about it. NOw that I am, it seems like it's coming out faster, of course! ANd yeah, I am grateful it's not cancer. I am not a naturally positive person, but I'm trying for humour, and saying that this positively f-ing sucks. Like, positive negativity. Which feels honest.
Voilà.
- Cara

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